Nancy T- Thank you for that link! I have not been able to find a listing for a neurologist specializing in balance disorders so your link is a big help.
Sidesteps- it suucks doesn't it? I have not had a VEP but have a feeling there is one coming for me in the near future. This has been an issue for me for 7 years but other than the initial episode and this current episode that started in September I was doing ok. There were things I could no longer do but as long as I avoided those things I was good to go.
I do not have double vision, that must be really hard to deal with along with the feeling of being off balance. I feel for you. I had nystagmus show up during my VNG and have had a few episodes where everything in my field of vision would begin to jump to the left then quickly to the right repeatedly. These episodes never lasted more than a couple of minutes though so I did not mention them to my neuro.
In some ways I don't want to go for any more testing because everything always turns out normal. On the other hand though I'm so tired of living like this.
Marching onward- while grumbling about it lol! :-)
You are not alone. I am having similar symptoms. I can't explain it except to say that I feel off balance. I get nauseated when it's worse. It feels like something is "different" in my peripheal vision but I just can't pin point it.
I'm having all sorts of vision issues though... I do have double vision and had nystagmus that showed in my VNG. I also had very mild INO when I was my sickest. My VEP showered assymetry but it was within normal limits (meaning no optic neuritis.)
It is miserable and at the moment the single most important thing for me to figure out. It is what is keeping me assertive on my health issues.
Besides the site Shell mentioned (which is not necessarily a complete list, because AFAIK it only includes professionals who choose to be listed there), check out the American Neurotology Society list (a few of these will be neurologists as opposed to neuro-otologists, but all are specialists in the inner ear/vestibular system):
http://www.americanneurotologysociety.com/images/forms/10_11memberstate.pdf
You are very welcome.
See if you can find a specialist here: http://www.vestibular.org/
If you find on that site, do some deep searches on the names and use quotes on the name only to narrow down your search. You may be able to drill down on the work of one or more, through articles, papers etc.
So hard to be in this situation with no resolve. If you have trouble with the computer screen and doing the searches, PM me, I'd be more than happy to help you in that regard.
-Shell
Thank you for answering shell, so much. I saw an ENT back in September and he said he could find nothing wrong with me. He did recommend some physical therapy but by the time I saw my neurologist to go over the visit with the ENT the vertigo was gone and my neuro said the PT would be a waste of time and money if the vertigo was gone.
I do plan on going in to my ophthalmologist to have him look at me and hopefully give me some suggestions as far as possible testing goes. I don't know what else I can do.
I'll do some research and see if I can find out if there is a vestibular specialist around here. I'm assuming that is different than an ENT?
Oh my,
You must be in turmoil. That sort of disturbance in an all so important systems changes your whole life, how you move, how you walk, how you see. I'm so sorry you are going through this and it's now changing on top of it all.
Question for starters..... Are you seeing a vestibular specialist?
-shell